Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Friday, January 20, 2012

Disability, Bioethics and Transplantation: Problems Abound

There is a long standing tension between bioethicists and disability rights activists and scholars. The exchanges between bioethicists and disability studies scholars in press and in person are polemical and often mean spirited. These exchanges transcend routine and strongly held scholarly differences. Simply put, there is a deep rooted personal and intense dislike between disability scholars and bioethicists. For example, Stephen Drake commenting on Peter Singer wrote that his "work as it pertains to euthanasia, infanticide, and personhood--the idea that some human beings are persons and others are not--is riddled with sloppiness and even dishonesty. To be fair, those traits aren't Singer's unique domain in the field of bioethics. Bioethics is a field that doesn't seem to demand intellectual integrity and honesty from professionals within its fold". Drake's harsh words are well within the norm. I get Drake's animosity--it is hard for any person with a disability to not take comments by bioethicists to heart.

Bioethicists and disability scholars have radically different views on topics such as growth attenuation, the medical treatment of infants born with disabilities, prenatal testing, life support, and end of life issues to mention a few hotly debated subjects. I hold a pessimistic view of whether bioethicists and disability scholars will ever be able to work together. Distrust runs too deep in spite of the fact bioethicists have made efforts to consider disability as a central issue. Some scholars such as Alicia Quellette in her book Bioethics and Disability contend "disability is now part of the conversation" and no longer a "shadow issue". I think this observation is far too optimistic. I also do not share Quellette's belief that bioethics as a "field is ripe for a change". In my estimation, bioethicists as a group have utterly failed to grasp much less try to overturn the gross injustices people with a disability routinely encounter. Bioethicists pay lip service to what they call the "disability perspective. Such lip service was on display this week when I read and heard comments by Art Caplan about the Amelia Rivera case (According to her parents Amelia Rivera was turned down for a kidney transplant because she has a cognitive disability). Caplan is the Director of the Center for Bioethics at the University of Pennsylvania and seems to be the go to guy when the mainstream press needs a sound bite from a bioethicist. When the Rivera case spread across the internet like wild fire I was disinterested. I was not at all surprised the Rivera family was told their daughter was not a candidate for a kidney transplant because she was "retarded"--not even if the kidney came from a family member. The bias the Rivera family encountered was nothing new to me or parents of children with profound cognitive disabilities. In fact I would characterize the bias against people with a physical or cognitive disability as routine, ordinary even, in the health care system. And this is why Art Caplan gained my attention; in "Serious Issues in Disabled Girl Transplant Case" he wrote just enough to appear unbiased and supportive of people with a disability. For example, Caplan noted "The issue of disability and access to a life-saving transplant merits serious reflection". He continues:

"Whether the kidney comes from a cadaver donor or a living one, transplant teams always think about a set of medical facts in deciding whether to transplant anyone. Is the person able to go on kidney dialysis? Is she healthy enough to survive surgery? Does the patient have a donor who closely matches her blood and tissue type increasing the chance that the transplant will work? There is nothing special about the presence or absence of mental disability with respect to these questions. But morally, things get a little stickier."

The phrase "morally things get a little stickier" is deeply problematic. Caplan correctly notes the transplant team needed to consider who would care and manage post surgery medications for a person with a cognitive disability. Transplant teams need to consider the long term survival of a person with a cognitive disability who may present other daunting medical conditions. Transplant teams must consider whether a person with a cognitive disability lives in an institution. All these points are valid. Yet I consider his contention that "each case involving a disabled person has to be looked at individually" misleading. If each case was looked at as Caplan suggests why did most transplant programs refuse to even consider a person with a cognitive disability until the mid 1990s. More to the point why are people with cognitive disabilities not often placed on waiting lists for organ transplantation? Could it be institutional and social bias is rampant? The point I am trying to make is Caplan is ignoring important questions that are social and not medical. For example, all people with a cognitive disability should receive adequate health care and support services. This is often not the case. And why do people with a cognitive deficit live in an institutional setting? In my estimation Caplan wants to restrict his observations to medical criteria and ignore all social and cultural variables. I am not suggesting transplant teams ignore medical criteria--I gladly accept these are the primary factors. But we do not live in a medical vacuum. Bias is not left outside the hospital door when medical decisions are made. Thus I find the conclusion to Caplan's essay frustrating in the extreme.

"There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases."

Bias against those with a cognitive disability is a given in my estimation. This population's humanity is not acknowledged. People with a cognitive disability do not share the same freedom, equality, dignity, and justice as "normates" to use Garland-Thomson's awkward word. Some scholars have even argued that people with profound cognitive disabilities are nonhuman. As such they do not share the same basic human rights that are enjoyed by those with the ability to reason. To me, such arguments reveal the inherent value of the social model of disability. The "problem" is not a given physical or cognitive impairment but rather the refusal of society to willingly incorporate that difference. This refusal leads to social oppression that is deeply ingrained and has a long history. I am reminded of this history every time I drive to Vermont and pass the boarded up Hudson Valley Psychiatric Center. I shudder every time I pass this facility and wonder how many lives were lost and destroyed. Here is where I depart from Caplan and other bioethicists. For me bioethics and disability scholarship is personal. It is not an interesting intellectual exercise. It is not a job. It is not career. I want to do nothing less than ameliorate bias. I want to live in a world where disability is an accepted and a normal part of the human condition. I want to live in a world where the parents of Amelia Rivera do not make headlines. This is about much more than one little girl and her parents who encountered gross bias. Her story exposes a dark under belly of ingrained social exclusion for those with a cognitive disability. If you think I am being overly dramatic I suggest you read the comments posted to the article by Caplan or those published in USA Today, Huffington Post and other news media outlets. The bias there is shocking and it is a given kidneys do not go to "retards" thereby reinforcing my belief our culture does not value the existence of people like Rivera and me for that matter.

6 comments:

Bioethics (ala Singer and Warren) is a lethal mixture of science (biology) and ethics (bias/art/assumption). They do not belong in the same house...according to these folk, my son is a "non-person human." This same Singer who makes judgments about the utilitarian value of disabled people asserts "mutually satisfying activities" of a sexual nature may sometimes occur between humans and animals and should be permitted. WTF!

Transplant criteria does not include IQ, from anything I have read. The doctor was out of line if he did indeed state that the MR designation in Ameilia's file precluded her from transplant at CHOP. I've dealt with CHOP and seen many children get transplants and other expensive procedures when they were mentally disabled.

So has CHOP now added this IQ requirement for the tranplant list, is this doctor out of touch and a jerk, did he miscommunicate (from the Riveras' account, he spoke an accented English), did the Riveras misunderstand, did the Riveras spin this without all of the relevant facts?

Catherine: I think if you went on Huffpost and read just a handful of the comments that ensued, you would probably not have a hard time wrapping your brain around the fact that many, many people believe a child who is cognitively disabled doesn't "deserve" an organ. While I have no idea whether this surgeon was "rogue" or not, he was not alone in his judgement. Scary and dispiriting stuff --

Bioethics, as a body of knowledge, seems to do no more than make explicit the underlying values and attitudes of American medicine. Bioethics will critique procedures, but remains in thrall to the arrogance of medicine in general toward the "undeserving" sick-those, generally with severe disabilities, who don't merit, in the eyes of medicine, their precious time and expertise. Even in sitcoms about medicine, the actors are always comfortable making fun of, and demeaning, people with severe disabilities, such as people with dementia.

Unless bioethics develops a real critique of medicine as a profession, it will always devalue people with severe disabilities.